I decided to write a little about what I’ve been going through physically for the past months/years. I know that many people struggle with constant pain, and that Lyme disease is largely misunderstood. It’s very difficult for people to understand how badly we feel when we look “normal” on the outside. I’d like to raise awareness for people with invisible but debilitating maladies, and for lyme disease and the seriousness of it.
For the past couple of years or so, I’ve had excruciating pelvic pain. It started probably a bit before that with extremely painful periods that would knock me out for days. Then, it progressed to where I had such pain mid-cycle, and finally, it got to where I had terrible pain, (that required strong pain meds in order to function at all) every day.
I began aggressively seeking help.. the pelvic pain was the absolute worst, but I also struggled with waking up to terrible joint pain and weakness, mostly in my wrists and ankles at first. I also caught just about every bug that came around, due to a very low functioning immune system. I saw a PA here in my town that friends had told me was very compassionate first. He checked me out, and gave me a tentative diagnosis of fibromyalgia, and referred me to a gynecologist about the pelvic pain. He ordered a lot of blood tests and a thorough ultrasound, and warned me that I might need a surgical procedure called a laparoscopy, to see what was going on in there. Well, the ultrasound didn’t find anything abnormal..neither did the blood tests. Yet, I still suffered terribly.
I began seeing a gynecologist that a friend recommended as a compassionate and skilled MD. I liked him at first, but he had a real problem with lacking in compassion when it came to my pain. I could tell that he was concerned about my becoming addicted, and worried that it could come back on him as a malpractice suit, or something like that. He gave me a couple of tiny prescriptions for the pain meds, and then just refused to continue. Luckily, my PA came through for me and started prescribing them again. I truly don’t know what would have happened without them.. the pain felt like a 10+ most of the time. The gynecologist made me feel like a junkie for wanting these meds..I felt that at first meeting he thought me a respectable person, but my need for pain meds eventually seemed to diminish his opinion of me, and that hurt. Some people are extra pain sensitive, and I believe I am one of these. But, really, I think that the kind of pain I was experiencing would drive most people to desperation.
Anyway, I went ahead with the same gynecologist, as I felt like he was skilled at what he did.. but I didn’t feel very personally comfortable with him. I went on to have a laparoscopy by him, and again, nothing abnormal was detected. It was frustrating, and I knew the doctors might be starting to think it was all in my head, or that I was just a junkie looking for a fix. Time went by, on and on, and I continued to suffer with horrendous pain. I had lost my outside the home job the year before, as I just hadn’t been able to go often enough, due to the pain, catching the flu and every other bug that came around, extreme fatigue, etc. Every day I went, I only got through due to pain meds, and I don’t think there were more than a handful of days that I went when I wasn’t sick with something (cold, etc.). Still, however, they wanted more consistency than I could offer. I was told that I did well at the job, except for my consistency in being there..that I was welcome to come back if I could get my issues under control, but for now I had to be released. It was actually a relief, but also a blow..as it meant I couldn’t help to keep the finances above water anymore. So, bills were piling up and I wasn’t helping to carry the load. I felt, and still feel, like a drain on the families’ resources. It was depressing.
I finally, in desperation, gave in and had a hysterectomy. I thought that it HAD to be something to do with my uterus, and the doctor suggested it could be adenomyosis (endometriosis inside the uterus.) During the surgery, he found a rare form of a cyst on one of my ovaries, and removed that as well. I spent a day and a half in the hospital, and my pain was THROUGH THE ROOF! I felt very depressed while I was there, wondering if this had been a bad decision. They had me on two strong pain pills every 3 hours round the clock, plus an ibuprofen related drip was given to me intravenously and constantly, and when I’d still break down in tears from the pain, they’d give me a morphine shot. I was told I could stay another night in the hospital for pain management, but I was afraid of the monumental fees that I knew were being racked up, so I went home the day after surgery. Unbelievably, the doctor prescribed NOTHING for my pain to go home with?? Well, he did give a tiny bottle of ibuprofen..but ibuprofen in pill form has never helped me with anything. I couldn’t believe it when my husband came home with the things I’d been prescribed upon checking out, and there was absolutely nothing for this excruciating pain!
Thankfully, again, my PA provided some pain relief. Really, healthcare providers should all be taught that some people have really real, incredibly debilitating pain, even if you can’t see it. I don’t understand why some have absolutely NO mercy. Thank God for my PA, anyway. The gynecologist just told me when I next saw him that “you went home early” (from the hospital) and “I’m NOT giving you any pain pill refills.” I wish I’d had my sister there with me.. I was too weak to speak up for myself, but I know she would have. *sigh* I thought I might be infected, the pain was SO bad, plus I had (and still have) dark red veins showing on my legs up in the groin area. The doctor checked, and said it all looked fine. He said he didn’t know what the red veins meant, but didn’t seem concerned at all.
Okay, before I even had surgery, I was thrown a curveball. I found out that I have lyme disease. I’d asked my PA to test me for it, as he wanted to run some new tests, and I figured, why not check, even though I really doubt it’ll be positive. I thank my friend Stephanie for encouraging me to do that, because she was right. I realized that that could be causing so much of my pain. My PA tried to refer me to someone that treats lyme in a town about an hour away..the closest one he knew of. I waited and waited, called and called, but that doctor just would never get back to me. I posted about my lyme problem on fb, and someone told me that her family doctor had treated her for lyme. He is closer to home, so I went to him. He is not a specialist in any way, but knows a little. He at least was willing to get me started on some treatment.. I am now on two types of antiobiotics, and probably will be for at least a year. The more I read about lyme, the more I wonder if I might be on them for the rest of my life.
I recently began vigilantly searching out dietary measures that I could take to help my body to fight and to heal itself. I’ve always been somewhat interested in “health food” and eating well and naturally, but I’d slipped up and wasn’t always doing so. I looked at one diet that many have claimed has cured them of late stage cancer, and that many others have claimed has cured them of a variety of autoimmune disorders, other maladies, and lyme disease. I wanted to try it, but also looked up cons..and came to the conclusion that there might be a chance of it being dangerous, esp. starting it while being so underweight (I’ve lost 30 some pounds througout this whole ordeal.) Now, I’m taking a lot that I’ve learned from researching that diet, as well as things I’ve learned from communicating with other lyme sufferers and pain sensitive folks, and am following a high alkaline, low acid, as organic as I can get, whole foods diet, with no beef and little to no dairy. I ordered a juicer recommended by the first diet I researched..it is a masticating juicer, and is one that they claim preserves the live enzymes and nutrients much better than the centrifugal juicer I already have. It is also supposed to produce much more juice per produce used. It should be here soon, and I’m excited to flood myself with all of these raw, live enzymes and vitamins that will help my body to counterract the toxins I come in contact with daily, and that will help to clear them from my body. I am not going to follow an all juice diet, but plan to drink several fresh from the juicer glasses daily. I am drinking some now, using my old juicer, but I’ll have even more enthusiasm when I can utilize this better juicing method.
The best juicer if one is fighting actual cancer uses the grind and press method. I’d love to get set up with this type of system someday, but for now, as a healing treatment for my non-malignant conditions, and as a preventative measure, the masticating one will be good. Mine is by Omega. You can get a grind and press (two step) juicer from Norwalk, or you can buy two machines..a grinder and a hydraulic press, separately. Buying two machines can be less expensive than going with the Norwalk, which is over $2,000, but it is still several hundred dollars. It would be VERY worth it if you’re fighting cancer, though.
My husband has been doing EVERYTHING for me, plus working very hard at his job, and I’m so very thankful for him. I feel so blessed to have such a good man who would never even consider not standing by me as I go through these difficult times. He let me purchase the juicer, (it was a little over $200) even though we couldn’t really afford it. We’re both planning on it being worthwhile; though, as I have high hopes that it’ll get me back up on my feet and functioning again.
This past week, the pelvic pain is up and down, but overall much better than it had been.. finally! I think that I am just a slower recoverer, and am also just very pain sensitive. I have to wonder if I might have had an infection, as it’s doing better now that I’m on the antibiotics for lyme. This past week, my main complaint came from what I’ve learned is called a “herx reaction.” Once I started antibiotics, my immune system was finally able to detect the lyme spirochetes in my body, and started attacking them. As they’re being battled against, they release toxins, and my immune system’s fighting causes the general feeling of sick/malaise, the extreme fatigue, and the chills and soaking sweats. It’s been pretty miserable, but I’m getting through it, and I’ve heard that if you “herx” when on antibiotics for lyme, then you know it IS working.
I just wanted to do my little part to get the issues of chronic, invisible pain, extreme fatigue, and lyme disease out there to raise awareness. Lyme disease is little understood, and it’s hard to find a doctor who will treat it, let alone find one that is actually well informed about it. I keep hearing about one in the bay area (Redwood City, CA) who I may need to go and see eventually. Apparently, they use some alternative treatments, so mainstream medicine considers them “quacks,” but a young woman whose mom I’ve been communicating with (who also happens to go to my church ) says that they are good and that’s where she takes her daughter, who has a horrific case of it.
At church last Sunday, the father of this young woman gave my husband a list of foods which shows how acidic or alkaline they are, and talked to him a bit. They’ve been very caring, even though I haven’t been physically able to attend the church myself for a long time. It’s nice to have such caring, and such well informed, people on my side as I fumble my way through this unknown new territory.
I would definitely like to say ‘Watch out for ticks!’ The only time I remember finding a tick on my body was when I was 23 years old, and I am now 40 and have only just been diagosed. I don’t know if that was the tick that did it, or if I was bitten another time and didn’t notice it. I guess the deer tick (the one that can carry and transmit lyme) is very tiny, and their bites can often go unnoticed. I could have had this in my system for decades..and maybe it explains why I’ve struggled with such a low immune system and terrible fatigue for about as long as I can remember. If it’s been there that long, it is very late stage, which is harder to deal with. If you’re curious about how severe lyme can be, watch the documentary ‘Under Our Skin’ (the full movie streams on Netflix, and it looks like you can watch the whole thing on hulu.com too, HERE.) It’s a little scary, but I remain hopeful. I can’t believe how politicized it is..it’s simply ludicrous.
I would say, avoid tick infested areas.. if you must walk through brushy areas, cover yourself well and tuck your pants into your socks. Check yourself thoroughly and often. If you get a tick bite, you might save the tick if possible to have it tested. If you develop any symptoms that could be lyme, (red, round rash could be present, but isn’t always..may resemble a “bullseye,” but may not, joint pain/achiness, fever, flulike symptoms) get yourself checked out asap! The longer you wait to treat it, the more it can take hold of your system. I remember having several round, red, hot to the touch boils when I was in my late teens/early twenties..no one had any idea what it was then, but now I wonder if it could have been from the early stages of lyme. If only I’d started treatment then! But, I didn’t know anything about lyme disease, and my doctor never mentioned it. The dr. I saw gave me an antibiotic cream which did NOTHING. The only way they’d go away was to let my dad lance them open and squeeze them out, (ouch!) and then they’d heal up and go away.
This is a very weird disease.. it can be raging inside your body undetected and unopposed, and its spirochetes are nasty little buggers that can bore themselves into any part of the body, and they have the ability to “hide” from the immune system. The immune system’s fight causes the symptoms you feel when you get the flu.. but with lyme, you can have these foreign invaders wreaking havoc in your body with no opposition, as the immune system doesn’t detect them. It’s lousy!
I’ve had a bad few days since going on antibiotics, going from freezing cold to soaked in sweat, and just feeling downright miserable, but it’s starting to be less and less, and I know that now my immune system is finally fighting this stuff, so that’s good.
Today is the first day in a VERY long time that I’ve felt an inkling of a spark of spunk again. I hope that the trend continues.. and in my renewed desire to eat well and juice, I’ve been happily encouraged. My husband has wanted to follow a more plant based diet for awhile, and my daughter, Idelle, now refuses soda and junk food when offered. My daughter, Amelia, LOVES to drink the juice I make, and even likes to eat the pulp that’s left over. My son, Doran, also likes these new “healthy juices.” I think that this nutritional journey will be great all around.
I want to tell anyone out there that is struggling with lyme, or any other ‘invisible’ illness, to not give up! I totally understand how hard it can be. People so often don’t understand because you “look normal.” It’s so frustrating when you know they’re thinking it must all be in your head.. I know! I’ve had friends turn away or just stop communicating with me. At my job, I could tell what the teacher I worked under was thinking. People don’t understand why we may be grumpy, emotional, tired, and just plain sick.
Keep seeking information and take care of yourself to the best of your ability. Cling to the people in your life that really care, and don’t worry about the ‘fair weather’ friends. Don’t hold grudges, just know that maybe they weren’t supposed to be in your life at this time, and wish them the best. God bless you!