Good news to end it…
Last MRI of my spine.
Well, it’s been a while since I gave a medical update… Not a lot has changed in regards to the multiple sclerosis, I continue to del with excruciating joint and muscle pain though I do have meds that I take to help keep it at a tolerable level during the day, anti-inflammatory meds that help a bit with joint stiffness/pain, my vision problems are still significant when tired (white spots, blurriness, double vision), l’hermittes came back a few months ago, originally I hoped to blame that on my acupuncture but it clearly was not and I continue to take B12 for fatigue though I’m uncertain, as with the acupuncture, just how much the B12 injections help. It is challenging sometimes when people say “oh, you look great, you’re obviously doing much better” as I do not want to be argumentative, and so just go just smile and say thank you, I think though people are sincere in wanting you to feel better, they don’t actually want to hear if you’re not. Besides, it’s all relative, I am so blessed. God has blessed me with healthy children who are more wonderful than I could have ever dreamt. I am blessed to live in a great community in one of the greatest countries in the world. Everyone has challenges and I feel mine are minute compared to the struggles I see so many living with every day, in my own little town there are so many people with mountains to climb who I look up to wondering how they find the strength and courage to do so.
.
1/2 of the acccupuncture, there are also pins in my legs, arms, hands...obviously this is done by a licensed professional and should NEVER be tried at home or by anyone whom is not recommended by a physician.
Back to the update… Before Christmas I was diagnosed with Fibromialgia though I am not really buying that one, I think some specialists might have been grasping for a reason behind my pain other than MS (being isolated in the North things I believe are caused by MS and which I hear other MS patients saying they are experiencing and even receiving treatment for in larger centers are considered atypical here while common elsewhere) they were more comfortable accepting as there has been no ‘new’ activity mapped n the MRIs. I am waiting to have a telehealth appointment with the neurologist who originally diagnosed me with MS some time in the next couple months; that is encouraging as he does a lot of studies and trials with his patients so I figure he might have something to offer me. Not to dismiss what people with fibromialgia deal with but it seems ridiculous that because I supposedly have ‘trigger points’, where doctors can poke and prod me to cause pain, that are used in diagnosing fibromialgia means I have fibromyalgia – they ignore that every inch of my body feels the same pain and that I have much more significant pain in my bones. I have been told that “achy, sore pain” can mean this or that, I have never described the pain in my bones/joint or muscles as achy or sore, rather it feels excruciating, all consuming, debilitating, sometimes my legs feel like rusty iron stakes are being driven up through my bones, putting weight on these feels like my bones are being crushed or splintering into pieces beneath me. Similarly the pain in my joints feels like they are made of cement which has begun to set and like if I force them to bend they are grinding like if you close your mouth as tight as you possibly can than grit your teeth together, now imagine you could feel the teeth themselves, ever mm of them and not just the uncomfortable feeling in your jaw/gums from doing this, that, multiplied by 100 is the best explanation I can give… as frustrating as it is that I cannot seem to convey this to doctors yet, I do thank God that I found a family doctor who, whether understanding what I am feeling or not, at least respects my right to live, and have some quality of life and seems to be trying to help me find a specialist who will figure out what is going on (I don’t dismiss that it could be more than MS, I just do no think we have figured out what it is in addition to MS and that is the key to figuring out how to fix it – not just medicate the symptoms). Also, this doctor continues to do what she/he can to help me try the acupuncture in spite of difficulties getting it established (again, I have yet, through no fault of my own nor of my acupuncturist, been able to have substantial consecutive acupuncture treatments).
I continue the acupuncture, still somewhat hopeful. It certainly isn’t causing any harm though just how much good it has the potential to do is still up in the air as I have yet to get 10 consecutive weeks in, between my challenges at this end, the acupuncturist’s office closing during the holidays (that was when I was coming up on 10 weeks last, I though I would get them in and asked my family doc to lower the dosage of my pain meds as he was leaving… turns out that wasn’t a great choice as I did not get nearly the pain relief necessary for the reduced dose to offer adequate pain relief – especially when the thermometer dropped below -18, live and learn, now I am completely stressed wondering if I will find myself defending the right to have enough pain relief again, as I have unfortunately with the dose prescribed been dealing with significant pain and inadequate relief most days. Currently unable to discuss this with my doctor it cannot be adjusted.
One down,4 to go, I want to get the others dealt with while it's no big deal. A little anxious to have the results of this one however.
Last summer, Lloyd noticed what I brushed off as a birthmark (that I was not born with lol) changing… He asked me to get it checked. I did, unfortunately the Dr whom I saw laughed it off as an age spot and though I did not believe it was and was uncomfortable that she/he did not want to refer me to have it checked or removed I let it be, embarrassed when they made fun. Thankfully, my acupuncturist (she is really attentive/considerate) mentioned in November that she had noticed it changed and was concerned with the colouring and growth, this was enough to validate my concerns and she suggested that I try again to have someone remove it. Though it took some time to get in for this (in spite of their usually being a day set aside for this, each week, at our hospital) I finally had it removed by a locum 2 weeks ago, he agreed that it looked very suspicious, I am now awaiting results. It had in fact grown so much it was too large to be removed via punch-biopsy; he ended up needing to put 5 stitches and told me to have 3 other spots removed at follow-up appointments. I mentioned that it had been laughed off as age spots; he seemed surprised to say the least. I have not had opportunity to show the spots I showed him to my regular family doctor though I imagine she/he will concur with having them removed.
Obviously a reminder that Multiple Sclerosis, like most diseases/illnesses, does not provide any immunity to other ailments, illnesses or diseases.
This was Day 4, I was definetely uncomfortable with the many strange looks I received.
So, the same day I had that mole removed, I saw my dentist. This is the Good News part of my story… I have found an INCREDIBLE dentist!!! I have always had a fear of dental procedures; as a teen my parents worked hard to provide me with braces as I had awful teeth, unfortunately my wisdom teeth came in not long after having the braces removed and once again, though no where near as bad as pre-braces, my teeth were crooked. As an adult I have had some work done, always as an emergency patient as the anxiety I feel going to the dentist prevented any type of preventative or pro-active procedures – UNTIL NOW. I, for the first time in my life, since the fall have been seeing a dentist regularly, going back monthly to have all the damage, done through years of neglecting regular dental check-ups and maintenance, undone and fixed. I have had all cavities and dental work which was unfinished completed and so the day in question, after having the mole on my shoulder blade removed that morning, I had a wisdom tooth removed in the afternoon (this was followed up by my regular weekly acupuncture appointment causing me to feel an awful lot like a pin cushion by the end of it all LOL). Though the extraction was pretty much painless (other than the freezing which is never fun) but wow, afterwards, was I ever sore! Also, I looked like a mess for at least a week. I was bruised with a large, almost fluorescent, yellow bruise on my face which I finally became so self-conscious about that I took my Mom’s advice and put a band-aid on my face covering what I could of the bruise which I had written “wisdom tooth’ on with an arrow pointing at the uncovered part of the bruise hahaha. Now I am incredibly excited that at my next visit we will be fitting my trays for teeth whitening, following that I hope to make a plan for getting my teeth straightened again.
So, Lloyd and I hoped to start working out at the gym; this has been something we’ve wanted for a long time, the only time available in our day for this is early morning before Emeraude wakes up so the struggle has been finding someone to watch her. In all honesty though, I pretty much let myself be defeated and kept thinking ‘It’s so hard to find someone who will help that early in the morning’ but never actually asked a single person. I still don’t know who I’ll ask – watch out, if we’ve ever had even a 10 minute conversation, you might get asked haha – but I am going to step it up and see if someone is up to it rather than assume no one is. Lloyd needs this time with me, I want the time with him so I am newly re-committed to finding someone and have set a goal of before next week to get it done. February is a busy month, so it will be challenging to see how I will keep it all together, especially working out, while also traveling out of town a lot. Wish me luck, better yet, say a prayer – I’m going to need it!
