frustrations battled alone
How discouraged I feel at the very thought of possibly being unable to take our annual camping excursion to White lake… Just typing it brings tears to my eyes and I fear so deeply that this could actually happen. I would not have ever thought this could even be possible unless I was truly on my death bed. I look back at memories from my childhood with that someone close to me in a wheelchair at that very park and yet these are very fond memories, so I know how important it is not just for my own mental health and ability to stay in the fight, but also my children’s happiness, that we take our trip, regardless of my physical state.
Should that not be enough? My willingness to go regardless of the small details (like bringing along my wheelchair – we did last year with no problems) or figuring out how to manage the injections I receive every 4 hours perhaps by having a subcutaneous dilaudid pump put in if necessary. That last one would likely be impossible although from what I have found to date, might put some distance (for more than 4 hrs I think) between myself & the hospital. I began requesting more information in regards to it in January at which time my doctor simply said that “yeah, I don’t know why they don’t do those here”… and changed the subject. I WANTED MORE INFORMATION. I thought at the time that by “here” he meant Canada. now he told me that he actually meant Manitouwadge. OF course they do not ‘do those’ in Manitouwadge is all I keep thinking – we have no surgeons, even the picc line I had at one time had to be put in in sault ste marie but why on earth would that be the deciding factor as to whether or not I get to have a life??? If he means maintaining them (I get the impression they still require a certain amount of hospital trips…But all I need is to be able to camp 45 minutes from manitouwadge) I might also share with him that when I originally requested to have IVIg treatments I was told the same thing, that “they don’t do that here” but Dr. Hall looked into it and was in fact able to have it at our hospital and I got 5 decent months of living out of that.
Tomorrow I start acupuncture. I had been so hopeful in regards to this but after a number of negative, discouraging and dismissive comments on my doctors part in regards to this course of action I am feeling less and less confident that this could help with the fatigue and pain I have now been enduring for months (I had 3 weeks of life this year that did not require trips to the hospital every 4 hours, these only helping to reduce the pain, certainly not to eliminate it and I sometimes endure for hours before being able to recieve meds. add to that the frequency of my needing to argue for those meds and it all becomes very discouraging).
I cannot let go of yet another peice of our lives (white lake). I have accepted such a reduction in our quality of life (the kids and I) and wonder at what point does it become useless for me to keep fighting to be able to walk and dance with my kids or even stand to clean the house or shower… my house does not accomodate a wheelchair (the one I have is rather small and still much too big to go anywhere). I have dreamed of the idea of a trailer coming up for sale in town that would have halls wide enough for a wheelchair thinking it could be easier if I had the option of not standing but then, even when seated like I am now, I can bear more pain but eventually it reaches a level where I cannot work on my computer, worse yet when I can’t even follow a program for the pain that just cannot be tolerated.
Prayers please, that tomorrow’s appointment is the beginning of a new option… Prayers also that my doctor might understand that I need a doctor that is willing to speak on my behalf and who believes I have a right to live to the fullest of my abilities (certainly not what has been going on for a very, very long time), and who will encourage me to do so and help find options for me to consider… I want so badly to go camping with the kids. To leave the hospital behind even just for a month, to re-charge, enjoy nature and being able to give my kids the chance to just be kids again for a while where things are all about them and not centered around me.
More discouraging in the past few years have been the doctors who seemingly either doubt the level of pain I am in or feel that my insistence to be treated so that I have a right to some quality of life, to fun time with my kids, who critisize the fact that know one has thought of ANY options for me. That’s right, the things I have tried (and most have worked for some time thank the Lord) have all been MY suggestions, options I found after HOURS (like I have time to be spending searching through research, ms websites, blogs and journals – time that should be spent LIVING as I continue to deteriorate).
- IV Steroids
- PICC line
- IVIg
- Information regarding the ‘head pressures’ (I now know that these are quite common and that I was right blaming them on MS & my period –readers-digest-ms-and-headache-en ) which are terrifying even think about.
- Port-a-cath (and now it seems the removal of it as well… I have been asking since february to please have it removed and the surgeons office told me today that there have been no calls on my behalf in all that time and she suggested that I call the doctor’s office DAILY until a referral has been made)
- Injections for the neuropathic pain I endure when not ‘well’ from treatments (treatment to date has meant IV Solumedrol, prior to that it was IVIg)
- Acupuncture
and probably other things I am forgetting but NONE were the result of a doctor’s suggestion.
Giving credit where it is due I am still thankful for the doctor (a local) who suggested the ‘cocktail’ (I think a nurse called it that) of iv meds which moderates the head pressure, he was the 1st (and still the only as far as I can tell) one to believe the severity of my pain (thankfully we now have a blood test result that showed an ESR of 70 to prove the pain was real, if only all pain could be mesured or shown in a bood test) AND want to help reduce it to a tolerable, humane, level.
I will try to explain all of this tomorrow evening as I realize it must seem like a confusing rant to most of you reading.
Prayers welcome, thanks for visiting.
