{"id":690,"date":"2022-09-28T16:17:12","date_gmt":"2022-09-28T23:17:12","guid":{"rendered":"https:\/\/seedsproutblossom.com\/?p=690"},"modified":"2022-09-28T16:17:12","modified_gmt":"2022-09-28T23:17:12","slug":"post-hsct-month-7-symptoms","status":"publish","type":"post","link":"https:\/\/seedsproutblossom.com\/?p=690","title":{"rendered":"Post HSCT – Month 7 Symptoms"},"content":{"rendered":"

\"Number<\/p>\n

Seven months in, more than half a year since treatment.<\/p>\n

I am on Facebook groups related to HSCT: HSCT in Mexico, HSCT in Russia, HSCT in general. The posts in these groups are mostly people considering HSCT at the beginning of the process. They are in the questioning phase, trying to get information, looking for certainty and guarantees where there are none. How much does it cost? \u00a0What should I bring?\u00a0 Where is the research?\u00a0 Will it work for my specific snowflake of symptoms and diagnosis? \u00a0How many people had it improve their walking\/pain\/fatigue\u2026? \u00a0For how many people did this not work?\u00a0 Did you regret it?\u00a0 Reaching for hope and afraid of the future no matter which choice they make.<\/p>\n

\"Mexico<\/p>\n

Many will never make it happen – because of fear, because of money, because of family demands, because it just isn’t right, because they are not willing to face disappointment, etc.. I was there, I remember how that felt.\u00a0 I had all the same questions, though I did do a better job of searching the page history before asking a question that had already been asked over and over.\u00a0 I trolled the comment threads.\u00a0 I read through the files.\u00a0 I dug up the research \u2013 less research than I wished there was. I wanted stone-cold guarantees and clarity. I ultimately had to find my way to make the choice inside the discomfort of ambivalence.<\/p>\n

And then I did it. I went to Mexico.\u00a0 I spent a full month there. I went through treatment that was simultaneously hard and brief. \u00a0I spent the money. \u00a0It is done, in the rearview mirror. Now the calendar is back to spinning forward faster and faster and when I look in that rearview mirror, the memory of that time is fading fast.<\/p>\n

After I got home, I followed the blogs, private Facebook groups, and Instagram pages of people who were in the cohort right behind me. I paid close attention to their journeys, and I had personal connections to some. The next month came, and I paid a little less attention, the next month even less. Now I am no longer following the stories. I pop into the FB groups of people asking the questions at the beginning and answer things where I can, where others haven’t already answered the same questions a million times over.<\/p>\n

I am currently in a Facebook group of people who have completed the treatment with the questions we all ask now. How long did you feel this way? When did things change for you? How long was your roller coaster? What did you do to get through it? \u00a0We are all looking for stories that match ours, for a string to hold onto out of the maze.\u00a0 There are many for whom this time is now far in the rearview mirror.\u00a0 They pop in less and less to offer stories and advice.\u00a0 For now, I am of the ones asking the questions, seeking stories that match my snowflakes self. There will come a time when this phase is in the rearview mirror for me as well.<\/p>\n

\"Life<\/p>\n

Legs\/walking:<\/h4>\n

These days I am feeling stuck in pain. Spasticity is a bitch. It seems to be getting harder, even though I felt like it was as hard as it could get already. I hope, I trust. I hope, I trust. I hope, I trust? that this is just a tunnel to get through. I have to believe that. These are still early days, 7 months into a recovery arc that lasts up to 24 months for some. \u00a0However, when I live in this body day by day, each day can feel eternal and the next seven months inconceivable.<\/p>\n