Still here......still in the thick of things

Hello friends and followers! I'm still here, I haven't been much into posting an update since my last one, although there is plenty to update....... Health status is pretty much status quo although I can say the withdrawl from the Effexor is gone and I'm settling in with the new medication, Savella - although now that I look back I think the Effexor was the best medication to be on for both depression, mood and pain - as I was getting off the Effexor I noticed a considerable increase in leg pain especially at my hips after getting up from sitting down....my ankles and my knees as well - this pain wasn't really noticable while I was on the Effexor, it was only after I stopped that medication that I really noticed it and had trouble with walking most of the time.

SO what to do what to do - one reason I went off the effexor was due to it's high cost - and my son going on medications I just couldn't afford both - so I did what any parent would do and sacraficed my own health needs for that of my son's well being.

It's been about 2 months now since the medication switch and I'm just not sure what to do. The Savella has started to work as the pain in my hips, knees and ankles isn't as prominent as it was while the going through the switch over, however I definitely notice a difference in my general mood. I have an appointment today with my Dr so we'll see what he thinks. I would really hate to go through yet another change in the meds, it's so hard to go through that and I really just want to be at the point of being able to resume my regular activities with little to no pain and discomfort. Wishful thinking? Maybe.......probably.....

Research, Research and more research!

I've been looking into different options and places both nationally and locally to go to in order to get some good treatment and on the right path - locally there are a few places that treat Fibromyalgia, one of them being The Fibromyalgia and Pain Centers - however upon looking at them I was told they are not taking on new patients - so moving on from there I found the Colorado Fibromyalgia Center in Lafayette, CO - I have an appointment with them for the end of the month.

I'm also looking into getting in at the Rochester, MN Mayo Clinic for an exam and treatment. I think if anyone is going to get me on the right path to wellness they can. They have a specialized Fibromyalgia Clinic there that only takes patients on referral, so that's one thing I'll be asking for today at my appointment. I'm really hoping they can not only get me in ASAP but also give me a great head to toe exam and either confirm the diagnosis of Fibromyalgia/CFS or find anything else that could be going on and causing me all the symptoms I've been dealing with and continue to have. So keeping fingers crossed. If I can get into the Mayo Clinic then I'll be canceling my appointment at the Lafayette clinic for now. I'm sure at some point I'll have to take up care here locally as I don't foresee me being able to travel to MN every few weeks for follow up appointments. It's a starting point anyway.

If you have ever done any kind of research into this disease you will know that there is all kinds of information to be found, most of which will say that the cause is unknown and that there are many potential types of ways to treat it, some conventional, some not so conventional. Because of this, it can be tricky to find providers who treat the disease. Research has come a long way on it and is continuing to carve a trail for the treatment of Fibromyalgia. In fact, I spoke to the medical director at the University of Colorado Executive Health Program yesterday as I was looking at going to see them - he pretty much reminded me that this disease is SO hard to treat and said that his particular program was not for me. This sent me for a full day of tears..........only because it was just another brick wall put up in front of me, and I'm so tired....so stressed.....so sick of being sick! I couldn't help it and I just broke down. My poor kids and husband are enduring a lot with all of this as well. My son sat with me at one point last night and said to me "Mom, you are so strong, and you can beat this thing........I know it's hard but you just have to believe! Believe that you will get through this and get better and you will! Remember, there are people out there who beat cancer, because they believe they will" - what an amazing child - he's only 9 and has such a grasp on life.

One thing that is of a concern too is that there are other diseases that cam mimick Fibromyalgia and CFS - such as Lupus, Multiple Sclerosis, Lyme Disease, Candida infections...and the list goes on - I'm at the point that I just don't know if I truly have fibromyalgia/CFS or if something else is lurking in my body that just hasn't been discovered as of yet. Being that I am in a constant stage of feeling sick...not so much pain at this point, just like I'm coming down with the flu all the time........feeling crappy day in and day out definitely takes a toll on you....if you have this terrible disease then you know exactly what I'm referring to...if not...you just have to take my word for it and know that when I say I don't feel good....I REALLY DON'T...........

Even though you might see me out at the pool with the kids, out at the grocery store......out at a fabulous fun Slumber Party for a client.....you might see me at the Park or walking my dogs with my husband.........you might see me and think to yourself "well she doesn't look like she is suffering".....but inside and all the time I am just not what I use to be. I honestly feel, deep down, that what I have could very well be Fibromyalgia - but I also feel there is more to it than JUST that......and that's what I'm on the search for. I am on a mission and will go to the end of the world to find out what is going on and how to fix it. This is a fight that I'm not giving up on...although there are many times I just want to say "I GIVE UP" and go crawl under a rock.....it's easy for people to forget...I see it happen all the time....I've lost some friends because I can't be out and about with them....I decline going out with them because I just don't have the energy to do it. I hate it...I hate this disease....I HATE THAT I'VE BEEN PUT TO THIS CHALLENGE! But regardless of how I feel about it, it is what it is and I have to find a way to get through it, learn to live with it and find a way to be here for my family for many more years.

One more thing - I had a few people ask me if I've been juicing and sadly the answer is no - if you recall, my juicer broke, I ordered a replacement part which I still don't have as the company said it's on backorder - so I stopped juicing for that reason and the fact that I didn't notice it making much of a real difference overall.......I may take it back up if I ever get this replacement part to my juicer.....the replacement juicer I purchased wasn't cutting it so between all that, I just kind of fell off the juicing wagon.....I might just have to get back on it though - it takes a lot of will power to keep at it that I'm just not sure I have in me right now with everything else going on......plus, if I'll be traveling then that will cut right back into my efforts - so I might hold off until I get a handle on what the immediate future holds for me......

I'll post an update later after my appointment - hopefully it'll be a great update with a referral to the Mayo Clinic!