When I say I have been set back as much as I am it is hard for me to explain what that means and what all my pain is like because some of the most severe and serious symptoms are personal and very hard for me to talk about. I am very protective over what and who I say things to, only my closest friends and immediate family know the depth of my battle and that is because I just can't talk about it. I am writing this post to help you understand that and am going to do my best at explaining what I am comfortable with sharing.
Last Fall I didn't have a blog yet but shared with many of you that I have been diagnosed with what doctors are calling some kind of autoimmune disease that has affected my reproductive system and pelvis. It's the main area my body has targeted and until I am further into lyme treatment we won't know if it's caused by lyme alone or if lyme is just not helping another underlying condition. The pain can be, and more often than not is EXCRUCIATING and RELENTLESS. One of the reasons I hesitate to share this is because when trying to explain this pain to some I often get the response "oh I have that too" only to see pictures of them doing things like riding a bike or going sledding and skating for an afternoon -makes me cringe just writing those things- things that if I tried to do now would bed-rid me for weeks. It affects every aspect of my quality of life. I have to push myself to walk or stand longer than about 15-20 minutes without leaning or holding on to something as the pelvic pain gets severe and it's only so long I can hold myself up before my legs will begin to give out. Sitting is also very difficult but I have found it's made much easier if I can elevate my knees with a stool to at least hip level or above as without my legs will go numb and the pressure in my pelvis intensifies. I also find prolonged sitting and standing makes me dizzy, nauseous and out of breath for whatever reason, like I might pass out. Things like going on day trips to the zoo or simpler things like pushing a full shopping cart are far from possible for me to do anymore. It has been months since I have even been able to carry a laundry basket up and down the stairs or carry a superstore bin full of groceries or push a vacuum. There are days when just moving around the house is very difficult. Life has had to change for us in ways we never imagined and we are so grateful for all the help we receive between caring for our boys, meals, cleaning, driving Lucas to and from school etc.
There are a few things I am okay with sharing about my pelvic pain here, we know my uterus is prolapsed somewhat which contributes to a bit of the pain but it is not prolapsed enough that they would consider operating on at this point. My physiotherapists feel that IF I could get myself to the point of being able to tolerate rehab there is a good chance we could correct that. We also know I have pelvic myofascial muscle pain - basically a fancy name for muscles that have been tight for so long it becomes a chronic pain syndrome. Any treatments for this attempted failed as the muscles often spasm in response. My sacroiliac (SI) joints are also very weak as the ligaments that hold the sacrum (triangular bone at the bottom of your spine) in place are not doing their job. Since these are so weak my pelvis rotates out and pulls the bottom of my spine to the right side, which is another source of pain. During physiotherapy we tried very hard to keep everything in line and strengthen things but by the time I stopped physio it needed to be adjusted as much as every day. All it would take is me twisting in my seat to grab something behind me in the van and it was out again. This caused me a great deal of pain as I do not recover well and I would sometimes spend a day in bed after physio as the pain was so bad I could hardly walk. Needless to say I have not responded to months of physiotherapy and it only set me back and fatigued my exhausted body more. Leaving my pelvis rotated out has helped lessen this pain but as it's not in the proper position it continues to cause problems and hurt. I have been shown how to put it back in place myself but I often leave it out as at least I can walk short distances this way and spend much less time debilitated. The plan for now is stop physiotherapy until my body can handle rehabilitation.
As I said above, there are still more serious symptoms in regards to my pelvic pain that are too difficult for me to talk about so I hope you can understand and respect that this is all I can share. Lyme disease can cause the most awful symptoms and autoimmune conditions are very common among lyme patients as it wreaks havoc on the immune system. But we don't know yet if treating the lyme will fix everything. Alleviating the burden of those infections from my body will help it function better, especially my immune system, which will give me a better chance of recovering from any possible secondary issues.
I am a patient of a specialist in Winnipeg who I have been told by numerous doctors is "the best in the city". I was also being treated at "the best pelvic pain physiotherapy clinic in the city" but after many tests, treatment regimens and second opinions, I have made no progress. Both places have exhausted all their options and have admitted to me I am a one-of-a-kind case and they don't know what to do for me. The list of things I have been tested for and all the things we've tried is exhaustive. Since my lyme test was done in the USA and there is no treatment protocol for treating chronic lyme patients in Canada there is nothing they can do for me in that regard. But after about a year wait I am now being seen at HSC and they are running more tests and re-doing a bunch that were already done two years ago to see if they can find anything else going on.
What's encouraging is that as a result of my treatments before I got the flu I was getting relief from most of the obvious lyme, bartonella and babesia symptoms. Ear ringing and popping, muscle spasms and twitching, night sweats, nausea, brain fog, neurological symptoms, foot pain, insomnia and early waking were all improving quite a bit. I even had a handful of people tell me that my colour looked better. The circular rashes on my arms that have come and gone for years that no doctor could diagnose and never responded to anything prescribed were also about 90% gone! The pelvic pain was improving as well but not as much as the others.
If I have a setback that is usually the first symptom to get worse - it flares up so fast and by the littlest things: walking or sitting for too long, not enough sleep, stress or being upset, making the wrong judgement call and running an errand or going to church on a day I'm not sure if I can handle it or not, being too busy, lifting something I shouldn't... the list goes on, and sometimes it flares or improves for what seems to be no apparent reason. One day I may tell you I'm doing good only to have a bad day the next. Sometimes even from hour to hour it's hard to tell how I am going to feel.
It also is the worst pain for me to handle emotionally and I think that is understandable without explanation. After so long it is hard not to feel defeated and hopeless. My doctors have offered me different kinds of prescription drugs that may help with the pain but they admit they are only covering a symptom and the length of time I would need to be on them wouldn't be good for my other organs. I have been asked by some of you about whether advil and similar painkillers help... I read something once that said it better than I ever could: "Advil for severe chronic pain is like going after a forest fire with a squirt gun." They don't do anything but flare up my stomach and digestive system as I have a very sensitive gut too so it's usually not worth that damage for little to no pain relief. I am very thankful for the care I have received from my naturopath doctor as he has helped manage my symptoms and some have even gone away. As mentioned in other posts one thing that does help is vitamin C and glutathione IVs. We don't know the exact reason why but those have provided the most pain relief of anything we've tried! It's like my body takes a sigh of relief. Since getting the flu I haven't noticed them helping but it was very hard on me so hopefully I just need more time to recover.
The ups and the downs are hard but this setback especially has been very hard; physically, emotionally and spiritually.
A dear friend emailed this to me a couple days ago:
" Psalm 18:29b "with my God I can scale a wall." basically do the impossible. "
